The reality of care for patients with rheumatoid arthritis

"Once the disease gets started, it’s like a runaway train – very hard to stop. It’s so important to treat early to stop irreversible damage."

Cheryl Koehn, Founder and President of Arthritis Consumer Experts (ACE), Canada’s largest patient-led arthritis organisation, is talking about rheumatoid arthritis, and the vital importance of early diagnosis and treatment.

A new survey has revealed that patients waited nearly two years for an accurate diagnosis, representing a significant delay in starting treatment for these patients.1 This is the first ever survey to investigate patient-reported experiences of RA models of care at an international level.

About the survey

Guidelines say patients should be seen by a rheumatologist within six weeks, because timely diagnosis and access to treatment can limit long term joint damage2,3

51% waited longer than three months for their first rheumatologist appointment1

Patients waited on average nearly two years (22 months) for a diagnosis1

“It’s a traumatic experience not knowing what you’ve got and waiting to be diagnosed, and in that time the disease can do permanent damage,” says Cheryl. “I was relatively lucky – I only had to wait 30 days for an appointment from my first symptom. But I woke up every morning just waiting for that appointment to come around.” By the time Cheryl saw the rheumatologist, she had 37 active and swollen joints and could barely walk.

Imagine waiting months or even years, having no idea what’s going on and feeling your body deteriorate.

Dr John Esdaile, a rheumatologist and Scientific Director at Arthritis Research Canada who co-authored the study, agrees that these results are troubling.

“As soon as the disease starts, the joints are getting damaged. That’s why we aim for diagnosis within six weeks of the first symptoms,” he says. “In British Colombia (Canada), we’ve actually made a rule that rheumatologists will see any patient with suspected RA within two weeks – that’s how convinced we are that delay is bad for patients. And it’s not just about mobility, it’s about years of life too. A diagnosis of RA is associated with an average reduction in life expectancy of 10 years – early diagnosis and treatment can give some, if not all, of those years back.”

The survey also revealed that many patients with RA do not see a rheumatologist as regularly as guidelines recommend, and many are not clear on what treatment they are receiving.1-3

Cheryl believes that insights like these will help patients with RA to understand the best practice ‘models of care’ – in other words, the standard of care they may expect to receive – and compare it with what they receive in reality. She stresses that while the science and knowledge around RA have advanced significantly in recent years, and the treating rheumatologists are extremely talented, healthcare systems are letting many patients down.

“If a patient doesn’t know how they should be treated, they are far less likely to receive optimal care,” she says. “Patient-centred care and patient engagement can only really happen when some of the power is transferred to patients themselves. Taking charge of your disease is essential with RA. We spend a tiny percentage of our lives in the doctor’s office – we are the ones in charge of our own care on a daily basis. We need to understand the best models of care.”

Dr Esdaile believes that rheumatologists can support this by advocating for early diagnosis and optimal care.

Rheumatologists can advocate for early diagnosis and better family physician and patient education on RA.

“The results show major healthcare gaps that ministries of health and higher education bodies should be looking at,” he says. “Rheumatologists can advocate for early diagnosis and better family physician and patient education on RA. Then the next big gap is the treatment gap; ensuring that RA is treated early on. We need to educate patients on proactive disease management and its benefits. It saves lives.”

Ultimately, Cheryl says, it comes down to giving every patient the best possible chance of living the best life they can.

“Reading the results actually brought tears to my eyes,” she says. “If one person is left off the ‘optimal treatment and care’ bus, that’s not good enough. We have an opportunity now to work together to get everyone on the bus.”

The global survey results were featured as a poster at the 2017 American College of Rheumatology’s (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Meeting in San Diego on 5 November 2017 at 08:30-11:00 PCT.

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